The Impact on the Family Unit

The diagnosis of a brain tumor can have a major and long-lasting impact on the entire family. Relationships can be both strengthened and strained. Families may band together at the beginning of the disease but fall apart as the disease progresses – or the opposite can occur. Regardless of the family’s reaction, studies have shown that brain tumor patients and their relatives often need more support than do patients diagnosed with other types of cancer.i

Every family reacts to a brain tumor diagnosis in its own way. Your own reaction, and the reaction of your relatives, will depend on your own backgrounds – how you have dealt with difficulties in the past, your knowledge of cancer and hospital care, and the support you find in your community.ii

Not everyone responds the way you think they will. I was surprised and troubled by the way my siblings responded, and needed to learn how to handle that.

How to manage being a caregiver while being part of a family

Family expectations

As primary caregiver for the patient, your family and friends may have expectations for how you should care for the patient. This can sometimes cause conflict as family members may expect you to give up your job, or hire more help. However, as primary caretaker, you may need to evaluate and decide what kind of support you need and don’t need.

More than just the patient to care for

It was difficult to balance caring for my husband while keeping life as normal as possible for our teenage daughters.

Many caregivers have expressed frustration as well as guilt when trying to care for the patient and handle all of the responsibilities of a household and other family members.iii On the other hand, this overwhelming responsibility is often mixed with positive aspects of caregiving, such as the opportunity to experience greater closeness.

Our love poured out to [the patient], and it was returned many times over. Sometimes I think of that time as a gift.

Another caregiver grew closer to her other family members while caring for her husband.

My mom would do the laundry and cook. My brother would come and sit and talk with [the patient]. I spent more time with them than I had in years.

Communicating with the family

Knowing that friends and family will likely reach out to you for information about the patient’s condition and how your family is coping, it will be crucial to find ways to make this task easier for you. One caregiver recruited a friend to go to doctor appointments and health team meetings and take notes.

Unlike me, she could listen to things with a clear head. She would send out updates to a list of people we gave her. By informing everyone at once, we didn’t have to repeat the same information to everyone who cared about [the patient], but everyone still felt included.

Communicating with children

Sometimes, caregivers think the best strategy is to shield children from knowing about the disease. However, talking to children about the diagnosis and keeping them informed during the disease, in an age appropriate manner, can help facilitate healthy coping and adjusting. See Communicating with Children for ideas on communicating with children of various ages and during different stages of the disease.

Explaining the brain tumor diagnosis to children using age appropriate language can help them better cope and adjust to the impact the diagnosis can have on a family.

When the patient is your spouse or partner

In committed relationships, there may be little question that one partner will care for the other in times of illness. However, caregiving for a brain tumor patient is far different from nursing someone through a cold.

Dealing with changes in personality

It was like caring for a stranger with only glimpses of the person she used to be.

Behavioral and cognitive changes may seem particularly cruel, but unfortunately, they can be a common occurrence in patients dealing with brain tumors and treatment. The sweet person who loved funny movies may no longer enjoy those same types of activities. A previously caring person may not react to your smiles or tears. The patient may even become violent at times.

She blamed me for everything. She even accused me of stealing if she couldn’t find something in the house.

It may be difficult to accept that the person you have loved for years is now different, perhaps forever. It is often tempting to tell your partner that you miss the way things used to be, or ask your partner why he or she is different now, but the reality is that your partner may not even realize the changes, making the situation even more complicated.

The best that you can do is to get the help and support you need – both day-to-day support as well as emotional support – to be able to accept and live with the “new normal.”

Taking on new responsibilities

In addition to all you will be handling in your role as a caregiver you may also find yourself taking on the responsibilities your spouse or partner used to handle. This can include everything from handling the family finances to taking care of young children. More information on both of these topics is available in the section on Caring for the Caregiver.

Physical intimacy

As you begin to live with your partner’s diagnosis, it is not unusual to start wondering about how it will affect your sexual life. Many people feel awkward or embarrassed to discuss this issue with their care team, but physicians, as well as other members of the care team, can help you find the answers to your questions.

You and your partner may have differing intimacy needs. Some people look to sexual experience as a way to reconnect, while others may not have the desire to open up physical or emotionally, particularly due to the exhaustion of being a caregiver. If you can, find ways to discuss the changes. Keep in mind that physical connection with your partner can be an excellent source of self-care for both of you.

There may be missed signals. Often, partners look for small gestures and signals that lead to physical intimacy. Because of cognitive and mobility issues associated with brain tumors, these subtle communications may be absent and you may need to think of other ways to initiate contact.

Your partner’s desire may change. Whether because of cognitive changes or treatment, sexual function may be significantly affected. Some treatments may cause early menopause in women or impotence – sometimes temporary, sometimes permanent – in men. You may want to speak to your physician or a trained professional about your concerns.

As a caregiver, you can still be a romantic partner although your sexual relationship may change. Intimacy has many forms. Look for small ways to connect physically besides the touching that comes with caregiving. Take that time to connect emotionally as well by talking about things that will bring you closer together.

Do not hesitate to ask for help on behalf of yourself and your partner. There may be medical and emotional help available that can assist you and your partner regain your sexual intimacy. Learn more about physical intimacy for brain tumor patients.

When the patient is a parent

When you are the adult child of a parent who has a brain tumor, the role reversal may seem strange. Suddenly, you are caring for the person who once cared for you.

There is little research on adult children caring for brain tumor patients, but some of the findings on those caring for cancer patients are encouraging. Although caregivers often feel overwhelmed and anxious about their role, one study found that caring for a parent with cancer could have a positive effect on the well-being of the caregiver. Many adult children of cancer patients found emotional fulfillment in their role. Others were able to mitigate the stress of being a caregiver because of the support and satisfaction they received in their other roles as parent, spouse or co-worker.iv

I was surprised at how much help I got from my company. They took an interest in what I was going through and I felt supported.

However, the same study also found that attitude had a large effect on the welfare of the caregiver. Adult children who felt a greater sense of duty for taking care of a parent had more depression. People with a more positive attitude about the caregiving experience – who voluntarily took on the role of primary caregiver, rather than feeling they had no choice – were happier. If your sense of obligation to care for a parent is causing anger, resentment and symptoms of depression, it is best to seek out help, whether that means looking for home care options or asking for help from friends and family members.

Grandparents raising Grandchildren

My wife’s personality changed. She didn’t want anything to do with the children. My mother did a lot of caring for them during this time.

When a brain tumor patient has young children, a significant portion of childcare can fall to grandparents if they are willing to take on this role.

Often grandparents worry about how to discuss the situation with children. It’s best to prepare how to talk with children about brain tumors, and try to keep communication as open and frequent as possible. Be a good listener, and let your grandchildren know their emotions and fears are normal. Talking about what they might have heard about cancer and brain tumors can be helpful to clear up misunderstandings.

On a practical level, let school officials and teachers know what you are dealing with. Develop daily routines and try to stick with them as much as possible, but also remain flexible.

Some grandparents may find themselves considering guardianship for their grandchildren. For more information, the AARP has a section on grandparents raising grandchildren.

Holidays/Traditions/Family Gatherings

Every year my family spends the entire weekend of Thanksgiving at our house. But this year, with all I have to do for my husband, I just don’t think I can handle it. What should I do?

While holidays often bring joy and togetherness, to those caring for someone with a brain tumor, the thought of the holidays may bring about feelings of anxiety and disappointment. There is no doubt flexibility will be needed and special occasions may be celebrated differently. The following tips can help you ease stress and increase family flexibility and understanding to help make family gatherings a special time.

Consider creating new traditions. If Thanksgiving was a weekend-long event, talk to family members about shortening the event, or getting someone else to host. Think about catering an event instead of cooking, or asking others to contribute food.

Share your concerns with loved ones about upcoming occasions. If you feel you might be emotional, or overwhelmed, or might need some time to yourself, tell them. Most likely they will be happy to help in any way they can.

Communicate with your family about the patient’s condition. If family members haven’t seen the patient for a while, provide a quick update of the patient’s condition so others will know what to expect. You can ask another family member to help you do this.

Adjust your expectations. It’s important not to isolate yourself, but on the other hand, you may have to modify the number of social obligations you take on. Be particular in choosing the events you attend based on which will be the least burdensome and the most enjoyable.

Enjoy the moment. Holiday times, especially if they are different, can bring up sadness and nostalgia for how things used to be, or worries about how special times will be celebrated in the future. If you can, focus on the moments now with your family and loved ones. Celebrate your strength in dealing with a very difficult situation.